Hi,
I've been extremely sick since returning from my trip to see Dr. Enlander. I thought it was exhaustion from travel, but it was so bad that I'm wondering if it could be the ImmunoProp.

I took last night off from ImmunoProp and so far today I'm much better.

Dr. Enlander and his staff didn't mention any type of Herx rx etc..

I called the office on Tuesday and am waiting to hear back.

If you've had an experience with ImmunoProp, I'd love to hear about it.

Thanks

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Do you know which of the ImmunoProp products you are taking? His ImmunoProp Protocollists several private label products made by ImmunoProp Pharma as well as other products. People might be able to give you better advice if we knew more specifically what it is you are taking.

For example, Immune Resist appears to be a combination of amino acids. Other members might be able to comment on their experiences with amino acids, even if they haven't taken Immune Resist.

I have to say that I'm a bit disappointed in Dr Enlander suggesting OTC products that are not clear about what they contain. My opinion is that patients are better served when they know what they are putting in their bodies. It's not like there aren't other OTC products with similar components and which are specific about what they (supposedly) contain.

All that said, if you are bedbound 23 hours a day then a trip to see Dr Enlander is very likely to have caused a major PEM episode. Earlier in my illness, a long trip to see a specialist could knock me back for several weeks.

It's always possible that anything that might affect the immune system could cause a reaction in a given person. I don't think I've ever heard of anyone having a reaction to the Immunoprop products, but I suppose it's always possible. However, it would seem more likely that it was the trip.

Every bottle of the Immunoprop stuff lists the ingredients on it to my knowledge.

Every bottle of the Immunoprop stuff lists the ingredients on it to my knowledge.

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If you have one handy, could you list the ingredients here so that people could help @sparklehoof determine if some specific ingredient might be giving her problems?

It's unfortunate that the manufacturer (or Dr Enlander) won't say online what's in the product. That requires the patient to purchase the product before s/he knows what is in it. Not best practice, imo.

It's always possible that anything that might affect the immune system could cause a reaction in a given person. I don't think I've ever heard of anyone having a reaction to the Immunoprop products, but I suppose it's always possible. However, it would seem more likely that it was the trip.

Every bottle of the Immunoprop stuff lists the ingredients on it to my knowledge.

Do you know which of the ImmunoProp products you are taking? His ImmunoProp Protocollists several private label products made by ImmunoProp Pharma as well as other products. People might be able to give you better advice if we knew more specifically what it is you are taking.

For example, Immune Resist appears to be a combination of amino acids. Other members might be able to comment on their experiences with amino acids, even if they haven't taken Immune Resist.

I have to say that I'm a bit disappointed in Dr Enlander suggesting OTC products that are not clear about what they contain. My opinion is that patients are better served when they know what they are putting in their bodies. It's not like there aren't other OTC products with similar components and which are specific about what they (supposedly) contain.

All that said, if you are bedbound 23 hours a day then a trip to see Dr Enlander is very likely to have caused a major PEM episode. Earlier in my illness, a long trip to see a specialist could knock me back for several weeks.

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@SOC- Thanks. Some of the ingredients are listed online, but I believe all of the bottles have the ingredients and amounts listed (I'm just not near the bottles now.) Fortunately, I'm not usually bedbound 23 hrs/day. I'm about a '2' on the Phoenix Rising Activity level scale -Moderate to severe symptoms at rest. Moderate-severe symptoms following
exercise; overall activity level reduced to ~20% or less of what it used to be able to do. Able to leave house; a couple times/wk for a couple hours at a time. confined to bed more than 1/2 the day; Unable to concentrate for more than 1 hour a day divided into 10-15 min. sessions.

I've taken similar trips before and while I've struggled with relapse after this time felt a little different.

Fortunately, I'm not as bad right now that I've d/c-ed the immunoprop and will later restart each formula 1 at a time to see if I can figure out if and what in the immunoprop is causing trouble. I've also learned about some other doctors thanks to the community at PR and will look into what treatment options they offer. I've been on all the active ingredients in Dr. Enlander's formulas 3 times since 2001 with other doctors without improvement. We'll see

@SOC- Thanks. Some of the ingredients are listed online, but I believe all of the bottles have the ingredients and amounts listed (I'm just not near the bottles now.) Fortunately, I'm not usually bedbound 23 hrs/day. I'm about a '2' on the Phoenix Rising Activity level scale -Moderate to severe symptoms at rest. Moderate-severe symptoms following
exercise; overall activity level reduced to ~20% or less of what it used to be able to do. Able to leave house; a couple times/wk for a couple hours at a time. confined to bed more than 1/2 the day; Unable to concentrate for more than 1 hour a day divided into 10-15 min. sessions.

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Oh yeah, I remember that period in my illness. It was miserable.

Here's what worked for me:
1. Pacing so that I wasn't always in a crash state. I needed to do HR monitoring to realize that everything I was doing down to taking a shower or walking across a room was putting me over my AT. Once I trained myself to stay below my AT, quite a few of my symptoms at rest lessened. I couldn't do much, but I didn't feel quite so bad. There are several thread here at PR on pacing according to HR using a HR monitor. Definitely worth trying.

2. Antivirals
This was huge for me. I had active EBV and HHV6. Treating those got rid of the flu-like symptoms including a lot of the muscle/joint aches. It also improved the cognitive dysfunction significantly. If you've got infections, antivirals are definitely worth trying if you can get them.

4. Treatment for OI
This was another big one, although not as much as antivirals. With meds for low blood volume and tachycardia, I am able to be upright more without getting exhausted or completely brain-fried. I don't have to nap 3-5 hrs in the afternoon (unless I'm in a crash), which makes life a lot easier. I still have to sit in a recliner (feet up, in other words) for a large part of the day, but that's a lot better than being in bed all day.

What I've not been able to get past is PEM. My PEM threshold is higher than it was 4 years ago, but it's still very low. I've orchestrated my life so that I'm doing the most I can without PEMing myself but the smallest bit extra, like 15 minutes more housework than usual, and I'm crashed. Very frustrating. Still, it's SO much better than being bedbound with not enough ability to concentrate to read.

You should be able to get sleep meds, treatment for OI, and pacing guidance from any decent ME/CFS doc, and even some GPS. Those could give you a significant quality of life improvement, although they are very far from cures for the illness. I'd push for those ASAP, whether it's with Dr E or your GP.

Some people have had some luck with dietary modifications. They haven't done anything for me or my daughter, but we don't have any of the GI symptoms common in ME/CFS so that could be part of the reason.

Antivirals, antifungals, antibacterials, and immune treatments are much harder to get --- and often take longer to work than the basic "starter" treatments. And when you start talking Ampligen, Rituximab, and the like.... well, those are VERY hard to come by. Only a few docs do them, and only a small fraction of their patients get them. And since they are experimental insurance doesn't cover them and the cost is far more than most of us can afford. Sucks, dunnit?

1. Pacing- I've done a lot with pacing classes and groups/activity logs/HR monitors etc over the years. I've been the only one in two separate classes who had no improvement. I continue to modify my lifestyle, reduce stresses when possible, limit triggers and set daily/weekly goals and stick to them.

2. Antivirals
I have a positive EBV and a very positive HHV6 as well as 1-2 others. I had a Lyme dr who prescribed Valtrex for me around 2005 because I tested positive for the same viruses then. I didn't have a response to the Valtrex, but it seems sensical that an antiviral that better targets the viruses that I have could have potential.

3. Sleep Meds
I've used Klonapin and Ambien. I used about 1/4-1/8 of a dose and felt very hung over the next day from both. I've tried other OTC herbal, homeopathic and home remedies for sleep. I almost never wake fully during the night, but according my sleep studies, one said that I have OSA and so I had to use a CPAP and have sinus surgery. A later study showed that I wasn't getting REM, but the doctor didn't recommend a treatment or seem to think that it was a problem.

4. Treatment for OI
I have the symptoms of OI, but have never had a tilt table test. My mom has ME/CFS, OI and vertigo and is on medication for vertigo and said it helps her considerably.

Thanks again for sharing so much and for being clear and thorough. I appreciate that you've taken so much of your time to write.

1. Pacing- I've done a lot with pacing classes and groups/activity logs/HR monitors etc over the years. I've been the only one in two separate classes who had no improvement. I continue to modify my lifestyle, reduce stresses when possible, limit triggers and set daily/weekly goals and stick to them.

2. Antivirals
I have a positive EBV and a very positive HHV6 as well as 1-2 others. I had a Lyme dr who prescribed Valtrex for me around 2005 because I tested positive for the same viruses then. I didn't have a response to the Valtrex, but it seems sensical that an antiviral that better targets the viruses that I have could have potential.

3. Sleep Meds
I've used Klonapin and Ambien. I used about 1/4-1/8 of a dose and felt very hung over the next day from both. I've tried other OTC herbal, homeopathic and home remedies for sleep. I almost never wake fully during the night, but according my sleep studies, one said that I have OSA and so I had to use a CPAP and have sinus surgery. A later study showed that I wasn't getting REM, but the doctor didn't recommend a treatment or seem to think that it was a problem.

4. Treatment for OI
I have the symptoms of OI, but have never had a tilt table test. My mom has ME/CFS, OI and vertigo and is on medication for vertigo and said it helps her considerably.

Thanks again for sharing so much and for being clear and thorough. I appreciate that you've taken so much of your time to write.

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Sounds like, as have many of us, you've tried a lot of things so far.

What HR did you use for pacing with a HR monitor? Some "pacing" classes don't know what they're doing and have you use a HR that's too high. Have you been tested to know what your AT is? Some of us find that besides staying always below our AT, we have to keep our regular activity limited enough that we don't have rapid increase in HR, even below our AT. A pretty good rule of thumb for PWME is to stay below (220-age)*0.6. Is that what your pacing class used?

Valtrex does almost nothing for HHV6. See the Treatments section at the HHV6 Foundation website. Since you're very positive for that, I'd ask Dr E (or whoever you decide to see) about Valcyte or Cidovir, or one of the other medications listed at the HHV6 Foundation.

It sounds like your sleep doctor didn't help much. Sadly, that's not much of surprise. You might ask your doc about trazodone since it seems to work best for ME/CFS. Some people have a bad reaction to trazodone, though.
From an article here at PR about sleep in ME/CFS:

Trazodone Studies in Chronic Fatigue Syndrome and Fibromyalgia
A 2011 open-label FM study found that Trazodone had the greatest effect on sleep, markedly improved sleep quality, sleep duration and sleep efficiency, and also had moderate effects on other symptoms such as anxiety and depression scores and pain interference with daily activities. The authors called the improvement of sleep quality ‘striking’.

Another 2011 open-label FM study by the same group found that Trazodone plus Lyrica (pregbalin) resulted in significant improvements in morning stiffness, pain (body pain and pain severity) and anxiety

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Treatment for OI can be a huge help. Fludrocortisone (florinef) seems to be the most common treatment, but far from the only one. Again, I'd ask whatever ME/CFS specialist you end up seeing about florinef or other OI meds, since they can make such a big difference.

How's the ImmunoProp protocol going? What have you started back and how are you doing with it?

I'm going to call KDM's office tomorrow and see if I can can an appt..

I'm also glad that I made the decision to stop taking the Immunoprop, I've been better the last two days. I've been slowly going back on it, but the side effects are returning but it's bareable. When Dr. E's office calls back I'll check to see if maybe it's normal. Thanks for asking.

Pretty good, relatively speaking. I'm still fighting an HHV6 reactivation, but feeling better than I did in Dec, so I'm happy for that.

I'm going to call KDM's office tomorrow and see if I can can an appt.

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Great idea. I'm really happy with Dr Rey, but KDM has knowledge she doesn't, so I've been giving thought to seeing KDM as well. I just can't afford it at the moment.

I'm also glad that I made the decision to stop taking the Immunoprop, I've been better the last two days. I've been slowly going back on it, but the side effects are returning but it's bareable. When Dr. E's office calls back I'll check to see if maybe it's normal. Thanks for asking.

Oh yeah, Bruce Campbell. Last I heard, he was very confused about AT and was advising people to use the AT for healthy people (220-age) not 0.60x(220-age), which is what most knowledgeable ME/CFS docs recommend.

Bruce Campbell also works with a lot of "CFS" patients who may not actually have ME, so you can't compare what you can do with what his other clients can do. In fact, I'd be surprised if a significant portion of his clients are severe ME patients. He does too much "set yourself activity goals and stick to them". That may work for mild ME/CFS, or the symptom chronic fatigue, but doesn't take into account the severity or the the fluctuations of moderate/severe ME.

I, too, did Bruce Campbell's course (at the recommendation of Dr Lapp) early in my illness when the symptoms were fairly mild. There were some good parts to the course. His activity recommendations were not among them, imo. I only got worse trying to push myself to set goals and stick to them when my body was not cooperating.

Fortunately I was taught the formula that you listed. (Unfortunately, I often hit my AT walking to the bathroom lol

I agree, It's true that since the students in the class may not have ME so this strategy may not be affective for people who haven't been treated for underlying problems that generally don't improve with lifestyle (infections, thyroid, etc.). I was never able to improve and I agree with you about the catch 22 of goal setting and overdoing it. The part of the class the goals group that was most difficult for me is that I couldn't relate to the other members in that I wasn't improving and I was in a different life stage.
There was one person who was more like me and we still email often.

Fortunately I was taught the formula that you listed. (Unfortunately, I often hit my AT walking to the bathroom lol

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Gosh, I remember that! When I first had my AT tested and started HR monitoring, I was completely shocked that I couldn't even walk across a room without going over my AT. And I thought I had been very, very conservative about my activity. Rude shock.

Happily, I can now do a lot more without going over my AT, but it's been several years (and a lot of different treatments) in the making.

The part of the class the goals group that was most difficult for me is that I couldn't relate to the other members in that I wasn't improving and I was in a different life stage.
There was one person who was more like me and we still email often.

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I had trouble relating with other members of my class, too. In my class there were many people who were still new to the illness and more about feeling sorry for themselves than figuring out what to do. I was past that stage by then and wanted support moving forward which they weren't ready for yet. They were also not as severely ill as me, so I was hard listening to them complain about how bad their lives were when mine was so much worse.